Wednesday, January 14, 2009

Requiem

Barry Baker.

Remember that name.

Let me tell you a bit about him. He was this 59 year old guy who lived a lone in the home he grew up in. His parents passed away. As a batchelor in his home, it grew into a state of messiness that is common for college kids and me on busy weeks. He'd had a series of health problems, he was overweight, he'd had a couple of hip surgeries and he walked with crutches. Barry, though, wasn't one to sit alone at home. His life was as exactly full as he wanted it to be. He took a cab every day to his workplace and every Sunday, like clockwork, he took a bus to his favourite pub. He was known in his neighbourhood and respected as a man with an intellectual disability who was making it on his own.

Then on November 29 of last year, a few weeks ago, he suffered chest pains. Wanting to live and knowing what to do, he called emergency services. The operator stayed on the phone with him as he waited for the ambulance to arrive. He collapsed and the operater listened to every sound hoping to hear his door open and help arrive. Well, she did hear everything, and what she heard astonished her.

The two ambulance attendants saw this big, fat, disabled guy, living in a messy home. They stood talking about him and decided that he wasn't worth saving. So they stood there and let him die, deciding to tell everyone that he was dead when they arrived. One more cripple out of the way, one more unnecessary life done away with. One more of us gone.

A note of fear creeps into my life. What would ambulance attendants see if they came for me. A fat, disabled guy, in an apartment full of wheelchairs, long reachers, and grab bars. What value would my life seem if it was just my body they saw - not my connections, not my routines, not my hopes and dreams.

Sometimes there seems to me to be an immense gulf between we with disabilities and thee without - sometimes disphobia seems to be such a dark and evil prejudice.

Today, I mourn Barry Baker.

I tell his story here.

I will tell 5 other people his story.

Barry will live today, here in Toronto.

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact that those who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.

40 comments:

Anonymous
said...

I heard about this before Christmas amd imediately shared the story with pretty much everyone I came across..I even forwarded the link to a couple of my managers.

I work in an organisation that workes for adults who have a learning disability and require some kind of home support...I was thankful to note that everyone I mentioned it too was as shocked and horrified as I was.

A truly horrific story from those who are supposed to care in our most desperate need. It angered me also that the ambulance men are to be charged with something obscure like "failing to deliver a public service". If there reported actions are true, deliberately letting him die and palnning the cover up as he lay there dying, then to my mind that should clearly be a murder charge. I see no moral difference between deliberately taking someones life and deliberately withholding your life saving skills on a whim. Had the vitim been a middle class solicitor i suspect the charges would be more serious. The scary question for me is how many other vulnerable people who didn't happen to have their phone line connected to the operator have their been.

A truly horrific story from those who are supposed to care in our most desperate need. It angered me also that the ambulance men are to be charged with something obscure like "failing to deliver a public service". If there reported actions are true, deliberately letting him die and palnning the cover up as he lay there dying, then to my mind that should clearly be a murder charge. I see no moral difference between deliberately taking someones life and deliberately withholding your life saving skills on a whim. Had the vitim been a middle class solicitor i suspect the charges would be more serious. The scary question for me is how many other vulnerable people who didn't happen to have their phone line connected to the operator have their been.

I'm glad you posted about this man. I heard his story on the UK news and was horrified that such action could be taken. I am glad that the people dealing with the call dealt with it straight away instead of covering it up. I hope the so called ambulance men are dealt with appropriately.

I'm horrified! I hope these people are facing the most severe of punishments! They really need to send a strong message here!

This scares me. We had (operative word HAD) an immunologist who felt that my son wasn't worth the extensive treatment we were providing him, all because of his mental disability. He didn't want to waste the valuable resource (IV IG) on someone like my son. He strongly suggested we stop the treatment. Luckily we are able to watch out for my son and make the decision to leave the care of this doctor and seek out a much better one. But what if we're not around, at a time someone such as these EMT's, has to make a decision for my son? A split second decision based on his little round face and almond shaped eyes?

Thank God that operator did the right thing and turned that tape over. Hopefully there will be some internal investigations and revamping of procedures and tons of training! And I pray for justice for Barry.

This horrifies me as a human being, but also because I am an Emergency Medical Tech. I ride on a local ambulance and respond to 911 calls. I EMT/work at a camp for kids with learning disabilities, adhd, autism and other disabilities. That camp is one of my favorite places, and those kids are my life. I don't even know what to say. I'm sorry Barry. I wish you had been my call instead of theirs.

Years ago, when my daughter who had Down Syndrome, needed a transplant..she was not allowed "on the list"..in part, due to her DS..I find that kind of prejudice and ignorance frightening..like her life was less worthy of saving than someone other child without DS.

She died.

It's unbelievable and sad to me, that this kind of ignorance can prevail in the world.

This reminds me of an incident from 1975. I was at my parents house, suddenly I suffered a Gran Mal seizure. When the paramedics arrived, they made comments that I was probably suffering a bad drug trip, based on my long hair and beard, not on the information of my medic alert bracelet. After my recpvery, I was sure to contact the fire department to file a complaint against those paramedics. Paramedics are biased.

Barry died because someone who didn't know him looked at him and his digs and made a value judgment, literally about his worthiness to live. That's beyond obscene.

Not very long ago at all, I lived in comparable squalor, simply because I didn't have room to organize and store my stuff. I was injured -- thank FSM it was in a public place -- and handicapped enough that I had to move to a new (and thankfully much better) living space. But I hadn't realized how much I had been fearing being found like that, in a place like that, until I was out of it.

This makes me absolutely sick. I have a severley disabled son who was denied pain medication in a hospital because he couldn't express how much pain he was in to anyone but me. I was by his side the whole time, and still the hospitalist and nurses denied him pain meds. Finally I called his neurologist, who then called and ripped the attending a new one. He said MOM KNOWS.

I fear for my son when he doesn't have a loving caregiver with him. I thank God for the four other neurotypical, non-disabled children I have, because they will advocate for him when I am gone. At least they had better, or I will haunt them.

I hope the operators are praised for doing their jobs as the paramedics are punished for neglecting theirs. I do not know what the procedure is for operators when the caller is no longer responding, but if they were as apathetic as the "rescuers" this incident might've gone unheralded. I can't imagine what they went through, listening in and realizing slowly that a man was dying while the people employed to save him stood mere feet away and deemed him disposable.Carina, I read a little of your blog. I'm so sorry about your sweet boy.

What a horrible and frightening story. I work with people with developmental disabilities and I can't tell you the number of times I've heard of a person being taken to hospital for a medical emergency and the first question the staff are asked is, "Is there a DNR order" as if that is just what is expected. If an 21 year old woman who didn't have physical and developmental disabilities arrived at hospital in need of emergency care I can't imagine she or her family would be asked if she was to be saved or not!

well, if he'd just been on a treadmill once in a while and laid off the pub chips he might have lived to see sixty. it's horrible what they did, but it was his own fault for not taking care of himself.

Dave, I have always imagined that up there in the North things are better than here in the States. I am becoming more disillusioned. That these types of things continue to happen is shocking and depressing as hell.

@Wendy: It's my understanding that one of the first (if not the first) questions asked in trauma is if there's a DNR order on file; if someone does try to resuscitate someone with a DNR order, it's considered a kind of assault, I believe. I'm not the nurse, my aunt is, so I may be slightly misinformed -- but I do know that it's a kind of assault.

I think this reflects an even bigger problem in our society that began somewhere around the time we said everything is relative. We did away with moral absolutes. Did this free some to act on their beastly impulses rather than upon ideals and purposes greater than themselves?Or, maybe it explains how some can draw amazingly silly moral equivalents, like say, eating chips vs. complicity akin to murder.

Maybe what is even more tragic than the death of this human being, is the death of mercy and truth.

I work in supported living and am often there to support folks through medical crisis. I was thinking about how horrific this was and who our agency works with who might be at risk if the EMT's were of this ilk. That took me to how many times I have been in the ER or ICU and the physicians and nurses find out the person I'm with does not have family, has a disability and does not have a DNR; the question always goes to "Well, how's his quality of life?." I have to explain that this person has a good life, friends, pets, a job maybe. I've wondered about what would happen if the person was a recluse who chose not to participate in the community, chose to be solitary, would the medical professionals feel that life was worth saving. And why do I have to answer that question at all. In the absence of a DNR (At the behest of the patient and not anyone else!) every life is precious and worth the fight!

As an emergency services worker myself (firefighter/emt) I ask you not to take this as an example of how all EMTs would react to this situation. These 2 are a disgrace to the profession. I was shocked and embarrassed when I heard about it, and also mad because I knew that for the forseeable future I would have to defend my chosen profession forom those who would use this as an example to characterize all emergency services workers as uincaring monsters.

Ah, applied Situational Ethics...in which the Lifeboat is launched and the less valuable are left behind.

The EMTs and Barry Baker, both products of our terrifying society. As to the anonymous commenter who feels the victim brought it on himself, you're on a slippery slope there, my friend. Ever smoked? Ever travelled on a plane? Ever exceeded the posted speed limit?

I couldn't believe this until I read it on a number of news sites myself. How can strangers judge someone they just saw for the first time and decide that that person's life is somehow not as worthy as their own?!

As a culture, we kill people before they're born on the basis of physical disability. It's called "abortion". If we can with a clear conscience take it upon ourselves to decide whether or not a baby with Downs Syndrome is worthy of life, why should we shrink from doing the same thing to a 29 year old?

First of all, not all women who hear that they are carrying a child with disabilities aborts. It's not a given by any stretch of the imagination.

Second, abortion is a much more complicated issue because the life of the mother is also at stake; physically, emotionally, financially. Abortion is legal because there are so many situations where bringing a child to term are shattering.

The EMTs didn't have their lives at stake. In fact it was their *job* to take care of him. They got the call. They responded.

Who else might they not feel like saving? An ugly woman? An old man? A rich kid who didn't deserve the life he lived? Someone of an ethnicity or a religious group they don't like?

They'll have no excuses in court that will fly. It's just a matter of which laws apply to the situation. And even if they've broken no law and walk away from this, you can bet they'll be shunned and probably not work as EMTs in that town again. Who would hire them? What will their friends and families think of them, now that they see what's in their hearts? As much as I'm angry for what they did, I almost pity them.

On a final note, abortion is legal, murder is not. Whatever your beliefs regarding abortion, it doesn't follow that abortion being legal makes it legal to kill someone, right?

It is so disgusting. I was shocked to read another cruel story where a 43 year old down syndrome patient Martin Ryan was starved to death in a hospital in Britain after he was not fed for 26 days. How much worse could these people get? When people with down syndrome and other disabilities are able to add so much of happiness and love to people around them, it is only narrow-minded maniacs like these that makes this world a cruel place to live! Their crimes are no lesser than a cold blooded murder. I hope they are punished severely.

Simply horrifying. This isn't failure to deliver a public service - it's manslaughter, pure and simple. First responders who see themselves in this story ought to be considering a career change right quick.

(B-Chan, your attempt to hijack this thread with your moral equivalency fallacy so you can go on about your own particular cause celebre in Dave's forum is grossly inappropriate, and I beg further commenters to let your sideshow die unattended.)

"Second, abortion is a much more complicated issue because the life of the mother is also at stake; physically, emotionally, financially. Abortion is legal because there are so many situations where bringing a child to term are shattering."

Filicide (killing your own child) is illegal, and it your argument would support filicide just as well as abortion. So no, abortion isn't legal because of those things, because if so then it would also be legal to kill your 5 year old. It's legal because many people don't think a fetus really counts as alive.

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Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

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Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.